CION Cancer Clinics
Li-Fraumeni syndrome and planning a family | CION Cancer Clinics
If one parent carries a TP53 fault, each child has a one in two chance of inheriting it. Couples have several ways to plan a family around that, from a natural pregnancy with testing after birth to IVF with embryo testing. This page sets out each option, what makes Li-Fraumeni different from other cancer genes, and the questions to settle before pregnancy rather than during it. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
On this page
- Can we have children if one of us has Li-Fraumeni syndrome?
- What are the ways to plan a family around TP53?
- What should we sort out before trying for a baby?
- The terms, in plain language
- A natural pregnancy compared with embryo testing
- Four things couples are told, and what is actually true
- What this page cannot tell you
- Common questions about Li-Fraumeni and having children
The short answer
Can we have children if one of us has Li-Fraumeni syndrome?
Yes. Each child of a parent with a TP53 fault has a one in two chance of inheriting it, and couples have several ways to plan around that. The options run from a natural pregnancy with testing after birth to IVF with embryo testing. None of them is the right answer for everyone.
What makes Li-Fraumeni different
With many cancer genes, the question of testing a child waits until adulthood. Li-Fraumeni is different, because some of its cancers can appear in early childhood. A child known to carry the fault is usually offered checks from infancy. So the decision about testing your baby comes soon after birth, and many couples find that shapes the choice they make before pregnancy.
Where the decision belongs
With the two of you. A genetic counsellor sets out the options, the costs and the limits of each, and does not push you towards any of them. In many Indian families, parents and in-laws expect a say. You can bring them to a session if you wish, but the decision is yours.
Choosing a natural pregnancy with no testing at all is a legitimate choice. So is every other option on this page.The options
What are the ways to plan a family around TP53?
Four broad routes. Some couples use different routes for different pregnancies.
A natural pregnancy
You conceive as usual. The baby can be tested after birth, so that checks start early if they are needed. Most families with Li-Fraumeni have their children this way.
IVF with embryo testing
Embryos are created through IVF, a few cells from each are tested for the family's TP53 fault, and an embryo without it is placed in the womb. It means IVF even for couples with no fertility problem.
What it needs
- The family's exact fault, clearly classed as harmful
- A laboratory able to design a test for it
- Time to set up, and a significant budget
Testing during pregnancy
A sample from the placenta or the fluid around the baby shows whether the baby carries the fault. It is usually chosen by couples who would consider ending an affected pregnancy. Indian law sets conditions and time limits on that, which your doctor will explain.
Donor eggs or sperm, or adoption
Using an egg or sperm donor in place of the parent who carries the fault removes the risk from the family line. Adoption is another route to parenthood. Some families find these right, others do not, and both responses are valid.
Not sure whether this applies to you?
Ask an oncologistBefore pregnancy
What should we sort out before trying for a baby?
Confirm the family result
The TP53 fault must be clearly classed as harmful before it can be used for embryo or pregnancy testing. A TP53 change found in blood can sometimes come from ageing blood cells rather than inheritance, so your counsellor may check this first.
Counselling together
A session with both partners covers every option, what each costs, how long it takes and how you each feel about it. It is easier to have this conversation before a pregnancy than during one.
Think about your own health
A woman with Li-Fraumeni will want her breast checks planned around a pregnancy. Anyone facing cancer treatment should ask about freezing eggs or sperm before it starts.
Decide, and feel free to revisit
The choice you make for a first pregnancy does not bind you for a second. Circumstances, money and feelings change, and so can the plan.
Words you will hear
The terms, in plain language
- Dominant inheritance
- One faulty copy of the gene is enough to raise risk, so each child of a carrier has a one in two chance of inheriting it.
- PGT-M
- Preimplantation genetic testing for a single-gene condition. Embryos made by IVF are tested before one is placed in the womb.
- IVF
- Eggs and sperm are joined in a laboratory, and the embryos that form are grown for a few days before transfer.
- CVS
- Chorionic villus sampling. A small piece of the placenta is taken early in pregnancy to test the baby's genes.
- Amniocentesis
- A small amount of the fluid around the baby is taken, a little later in pregnancy, for the same purpose.
- Variant of uncertain significance
- A gene change whose meaning is not yet known. It cannot be used to test embryos or a pregnancy.
Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Side by side
A natural pregnancy compared with embryo testing
Commonly believed
Four things couples are told, and what is actually true
Many carriers have children, by every route on this page. Whether and how to have a family is a personal decision. No doctor, relative or community elder gets to make it for you.
A father with a TP53 fault passes it on in exactly the same way, with the same one in two chance for each child. Sons and daughters are equally likely to inherit it.
India's assisted reproduction law allows embryo testing for known inherited disease and forbids choosing a baby's sex. Whether a particular clinic can test for your family's TP53 fault is a practical question, not a legal bar.
Each pregnancy is a fresh one in two chance. What happened with earlier children does not change the odds for the next one, in either direction.
Being straight with you
What this page cannot tell you
It cannot tell you which option is right for you. That depends on your health, your ages, your finances, your faith and how you each feel about testing a pregnancy. A genetic counsellor can help you think it through, ideally with both partners in the room.
It cannot interpret your TP53 result
What your specific variant means is a question for the counsellor who ordered the test. The page also cannot tell you what embryo testing will cost at a particular clinic, or how long a clinic will take to design a test for your family. Ask for both in writing before you commit.
Who this does not apply to
A TP53 change found only in a tumour, and not in blood, was not inherited and has no bearing on your children. That kind of testing is covered under targeted therapy. If you tested negative for your family's fault, your children are not at risk from it either.
Questions we are asked
Common questions about Li-Fraumeni and having children
What is the chance my child will inherit it?
One in two for each pregnancy, whether the carrier is the mother or the father, and whether the baby is a boy or a girl. The chance is the same every time. It does not depend on how many earlier children did or did not inherit the fault.
Does pregnancy raise my own cancer risk?
There is not enough evidence to say it changes the long-term risk. What changes is how you are checked. Contrast MRI is usually avoided in pregnancy, so breast checks may switch to ultrasound, and any new lump should be seen promptly rather than put down to the pregnancy.
Should we test our baby after birth?
Many specialists advise testing in early childhood for Li-Fraumeni, because a child who carries the fault is offered checks from infancy. It is still a decision for parents to make with a counsellor. Some prefer to know at once, others wait a little.
How much does embryo testing cost?
It combines the cost of IVF with the cost of designing and running a test for your family's fault, and it may take more than one cycle. It is rarely covered by insurance or government schemes. Ask any clinic for a full written estimate before starting.
Is embryo testing available in Hyderabad?
Fertility centres in Hyderabad and other large cities offer embryo testing, but not every laboratory can design a test for a specific TP53 fault. Your genetic counsellor can help you find one that can, and share your family's report with it.
Can eggs or sperm be frozen before cancer treatment?
Yes, and it is worth asking before treatment starts. Sperm freezing is quick. Egg or embryo freezing takes a little longer and has to be fitted around the treatment plan. Your oncologist can refer you to a fertility specialist straight away.
Do we have to tell our families?
No. Your result and your plans are private, and you choose who knows. Many couples do tell close relatives, because those relatives may carry the fault too. A counsellor can help you plan who to tell and how.
Where do we start?
Book a counselling appointment for both of you before you start trying, and bring the family's TP53 report. The CION helpline can arrange this and tell you which centre to visit. Counselling in Telugu can be requested.
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Want a specific doctor for your case? Mention them when booking.
Book Free ConsultationBook an appointment with our specialist
Share your name and number — we'll call you back within 30 minutes to schedule your consultation.
Sources
- GeneReviews (NCBI) — Li-Fraumeni Syndrome
- Human Fertilisation and Embryology Authority — Pre-implantation genetic testing for monogenic disorders (PGT-M) and Pre-implantation genetic testing for chromosomal structural rearrangements (PGT-SR)
- India Code, Government of India — The Assisted Reproductive Technology (Regulation) Act, 2021
- MedlinePlus — Prenatal Testing
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Talk to us
Planning a family around a TP53 result?
We can arrange a counselling session for both of you, before you start trying, to go through every option at your own pace. One helpline serves every CION centre.